Down Syndrome and the Pressure to Abort

Elizabeth Schiltz on Change in Attitudes

March 09, 2006
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MINNEAPOLIS, Minnesota, MARCH 9, 2006 (Zenit.org).- Many prospective parents are waiting for years to adopt children with Down syndrome, according to a recent article in the Associated Press.

So why is there an extended wait for kids with special needs, who are usually more difficult to place with families? The reason might be: the growing acceptance of aborting babies with Down syndrome.

Elizabeth Schiltz, law professor at the University of St. Thomas and contributor to "The Cost of 'Choice': Women Evaluate the Impact of Abortion" (Encounter Books), shared with ZENIT how aborting children with Down syndrome has not only become justified, but is almost considered a duty.

Schiltz also relayed her experience in receiving a prenatal diagnosis of Down syndrome for her son.

Q: Why do you think it has become socially acceptable to abort a child with Down syndrome?

Schiltz: Because, unfortunately, it has become socially acceptable to abort any baby who disappoints the expectations of the baby's parents for any reason, as the increasingly common practice of sex-selection abortion indicates.

Down syndrome just happens to be a disability that is easily identified through prenatal testing.

Not only have many come to accept that a woman faced with such news is justified in aborting her child, some now go further and insist that she has a duty to abort.

Bob Edwards, the scientist who created Great Britain's first in vitro fertilization baby, gave a speech a couple of years ago at an international fertility conference in which he said, "Soon it will be a sin for parents to have a child that carries the heavy burden of genetic disease. We are entering a world where we have to consider the quality of our children."

This is frightening. It signals an erosion of societal consensus about our collective responsibility for vulnerable people.

Society will increasingly believe that a mother who forgoes an easy abortion and chooses instead to give birth to a disabled child should not look to the community for help. After all, it was her "choice."

Q: Has prenatal testing contributed to the problem?

Schiltz: Prenatal testing has made the population of children with Down syndrome more vulnerable to abortion, because it's so easy to identify them. But the real problem isn't the testing.

The real problem is using the results of these tests as part of a crude "cost-benefit" analysis -- of balancing the "benefit" of giving birth to a child with Down syndrome against the "cost" to the mother and the broader society.

Obviously, such a cost-benefit analysis ignores the fundamental truth that every human is created in the image and likeness of God.

And, even on its own utilitarian terms, this analysis is often faulty because it rarely involves adequate information about the realities of living with Down syndrome -- either for the baby or the baby's family.

Brian Skotko, a Harvard Medical School student, published a pair of studies in the medical journals Pediatrics and the American Journal of Obstetrics and Gynecology just last year, concluding that few mothers were satisfied with the manner in which their doctors delivered pre- or post-natal diagnoses of Down syndrome, or the information provided by their doctors when they gave these diagnoses.

I applaud efforts like the bill introduced in Congress last year by Senators Brownback and Kennedy, called the Prenatally Diagnosed Condition Awareness Act, that would require healthcare providers to provide up-to-date, scientific information about prenatally diagnosed conditions and referrals to support services.

I'd like them to amend the bill to add information about the waiting lists for adoption of kids with Down syndrome.

Q: The Associated Press recently reported that many families are choosing to adopt children with Down syndrome and sometimes have to wait years. What are your thoughts on this phenomenon?

Schiltz: I am thrilled that this has finally caught the attention of the mainstream press. The newsletters and Internet listservs of Down syndrome support groups have been talking about this for years.

In fact, I know a woman who runs an adoption agency, Huminska's Anioly, that specializes in placing children from Polish orphanages in homes in the United States.

When she heard about the waiting lists at American adoption agencies for children with Down syndrome a couple of years ago, she started a special program for children in Polish orphanages with Down syndrome.

In the States, there's another resource: the Adoption Awareness Program -- Down Syndrome Association of Greater Cincinnati.

Q: What was your experience in receiving a prenatal diagnosis of Down syndrome for your child?

Schiltz: I think my experience of receiving the prenatal diagnosis for my son was somewhat atypical, because my doctors knew that abortion was not an option for me. Even so, three things about the process were really striking.

First, there is a phenomenal amount of pressure to make decisions quickly, because the whole system is geared to result in earlier and therefore "safer" abortions. The pressure to act quickly in these situations not only increases risk to the baby, but I think it must often prevent parents from thinking through realistic alternatives to abortion.

Second, I was struck by how little positive information about life with Down syndrome the doctors and genetic counselors were able to provide me. Although my doctor was very supportive of my decision, neither she nor our genetic counselor had any helpful information to share about life with Down syndrome.

Third, even though I was pro-life, and even though I spent my whole life loving my mentally retarded older brother, getting the actual diagnosis was extremely traumatic.

For days afterward, I hesitated to put my hands on my belly. I felt as though a stranger had moved in, and he frightened me. For weeks afterward, I felt as though I had lost my entire identity.

I had never perceived of myself as a person with a child with a disability. I had always perceived of myself as a person with "perfect" children. I didn't know how I could continue with the life I had always planned for myself.

But, gradually, I started to love that little "stranger" just as strongly as I loved the old vision of what he would be. And, gradually, I realized that my old self was still there, it just had some new things to learn.

Personally, I'm glad that I was able to go through that trauma before my child was born. But it's important to be sensitive to how devastating this kind of news can be to any parent.

Q: How are people with Down syndrome an important and special part of our society?

Schiltz: In her book, "The Child Who Never Grew," Pulitzer and Nobel Prize winning author Pearl S. Buck wrote this about her mentally retarded daughter: "[B]y this most sorrowful way I was compelled to tread, I learned respect for reverence for every human mind.

"It was my child who taught me to understand so clearly that all people are equal in their humanity and that all have the same human rights. None is to be considered less, as a human being, than any other, and each must be given his place and his safety in the world.

"I might never have learned this in any other way. I might have gone on in the arrogance of my own intolerance for those less able than myself. My child taught me humanity."

In addition to teaching me about humanity, I also think that my son has taught me something about divinity. I think my love for him sometimes provides a hint of what God's love for us must be like.

Like my love for my son, God's love for us doesn't depend on our intellect, our accomplishments or our proximity to what society defines as "success."

People with Down syndrome wear their vulnerability on their faces. They are a visible reminder that the image of God reflected in humanity includes people of all sorts of intellectual capacities.

It would be an impoverished society indeed that succeeded in eliminating such powerful teachers of both humanity and divinity.